tv [untitled] August 24, 2010 2:00pm-2:30pm PST
recommendation -- examine the possibility of waiver options to existing regulations, especially for the medicare and metical programs. this has the potential for existing programs for creative and integrative ways that are now possible to meet the future care needs for the people we are talking about. yet there are a variety of such programs, such as the assisted living program which allows metical to provide for people in the assisted living facilities. that is not currently part of regular metical. this is one among a number of programs that may hold progress -- promise in this regard. in an ideal world, we would have a long-term care system that would be accessible to everyone.
but until such a system exists, the most viable options are those that allows the current system to be tweaked. the hope is to use existing funding streams in more creative than integrative ways than the current systems allow. those are some of the recommendations my colleagues have been discussed which can be implemented. thank you moshiri get -- and thank you. [applause] >> good morning. i am with the alzheimer's association, and i am the share of the education and prevention subcommittee. -- and i am to chair the education and prevention subcommittee. there is a tremendous amount of work in a short amount of time. the goal of our group was to talk about how can we educate those living in san francisco so
that we can address issues related to alzheimer's and related disorders. our goal was to change attitudes in a positive way, to change believe, to address sigma -- i just did not, and improve outcomes. that was our task. the key guiding principles we were looking at it based on paul gibson's principles -- the one thing is not knowing what you are dealing with this bad. in the right kinds of information for the right audiences at the right time in the right way is what we are talking about. one of the challenges is to find reliable information. it was referred to earlier -- how do you know is good information? we have an excellent agency providing wonderful information. getting people that information
in a way that they know is there when it is needed is critical. i want to share with you a story -- this happened to me years ago, 10 years ago, i went to a support group and a woman said to me, "honey, you need to do something about those doctors." close your ears, adam and jay. sound familiar? she said, "i have a wonderful doctor -- yawn, enthusiastic, did indeed died -- down and enthusiastic and gave me a book that he said would teach me about alzheimer's pecan how many of you have read -- about alzheimer's. how many of you have read about alzheimer's? do not read it.
if you are a caregiver, read it in bits and pieces. the woman said to me, i got half way through and i was sobbing. i decided he could not have known what he was giving me. can you do something to help with that? that is what we are talking about. if we could wave a magic wand, who would we want to educate? the general public -- and know when to go to the doctor. diagnosed people having memory problems. give information to people having memory problems. to their care givers, their friends, professionals, nursing homes. the list is long, isn't it? professionals, physicians, psychologists, up police -- the police. then we identified nine key
areas. i have a slide to go through this briefly. i will not going to the recommendations, but just to show you the following, risk reduction. how do you know what you should be doing? if you do not have alzheimer's or other dimension, what should you do to reduce your risk? if you have diagnosis? what should you do to maintain brain help? early identification -- what does it take to get diagnosis? try to find people as early as possible, perhaps even in the mild cognitive impairment stage. what to expect as the disease progresses to. tricky. many of you know-from experience. caregiver wellness and support. i love our caregiver panel. our early stage panel as well talking about caregiver wellness. frankly, this next one is
probably the biggest challenge -- disease management for early, middle, and late. we outlined, what would that entail? what about emergency preparedness and the safety issues? we are in safety -- we are in san francisco, after all. ultimately, we want the right information for the right people at the right time in the right way. thank you. [applause] >> thank you, a panel chairs, and by proxy all the members of the panels. a great deal of work went into
the production of the actual recommendation of the panel and that is the time of day we are at now. i probably have a slightly earlier copy then when this was distributed. if your objectives are not on page 9, the well could have been. what you will see is we have 14 objectives. then, in relatively great detail, we have a series of recommendations to address each of these objectives. some have just one. some have as many acts -- as many as five recommendations for a particular objective. now, the remaining time is very short period as i mentioned earlier, one of the prime intentions is to give you an opportunity to provide feedback to the expert panel. your feedback is being recorded
and will be reflected in the final version that will be published in august. but kathy and i decided to do, since there were 14 objectives, was to divide them 7/7. that took a long time. [laughter] i am going to very briefly prevent the first set in. kathy will facilitate the discussion of the seven. then we will switch. she will present the final seven and i will facilitate the group discussion. as you can see, the first objective was to improve capacity. does that surprise you, that that would be the first thing that we would think necessary to recommend? although the recommendations go into great detail, probably the
key is recommending that we integrate with the services that are so ably provided in the city. the intent of the expert panel was not to completely redesign the care system that has been so organically developed an innovative flee -- and innovatively developed. but we have heard from care givers and our own experience is interactions with long-term care delivery system is disappointing, because individuals lack understanding and knowledge of dementia. our recommendation was that all agencies and programs that deliver service, whether it is meals on wheels or on and on and on and
on, get an adequate training and understanding of current best practices in the management of dementia. all agencies would be dementia- capable. i love that term. it sounds good. the second objective, because it will be inherently obvious soon, there was no logical order to the way we presented these objectives. you could quibble, and all quibbling needs to be done outside -- of the second objective was to improve public and professional awareness and understanding of dementia. i think we all understand what disasters occur when people with early stage dementia or stressed-out caregivers interact with the system that just does not get it.
i've seen examples where people with dementia find their way into the criminal justice system without anybody recognizing that the behavior that has been decriminalized is actually a manifestation of dementia. so you wind up with a terribly inappropriate, unbelievably expensive reaction to a problem that shouldn damaged in an entirely different way. -- best have been managed in a different way. it requires education throughout the professional community and the public to best to channel the needs of an individual into appropriate service delivery. unfortunately, one of the manifestations of the demographic that had mentioned to lead us to@c
larger and larger percentage of dementia sufferers in the county is that we do not currently have an adequate work force to care for all of these individuals. i do think you will see that some of our leader recommendations are going to involve less institutional care, more delivery of care in the home environment, more home- like environment for people that can no longer be maintained in their own home, and all that is very labour-intensive. and yet, we have a terrible shortage of nurses and nurses' aides and other trained individuals>t so the third objective was to develop an informed and effective work force for people with dementia. that includes both direct caregivers and physicians.
we are ready for snide remarks about physician knowledge, and it is justified. we have wonderful training institutions in san francisco and certainly the opportunity. to get more dementia care to the individuals involved. the fourth objective was expanding capacity to deliver high-quality early diagnosis and intervention for all. now, we have already heard that it is gratifying to be given a diagnosis that helps to understand. 8w if the doctor's recommendations come to fruition, and i believe they will, we will have disease
modifying treatments that will be best used early in the illness. and a recommendation of the panel was to encourage and facilitate the diagnosis of mild cut its of impairment and even earlier symptom recognition so that these early treatments will be available when they come online. you'll also see recommendations to foster geriatric fellowships and the training of doctors who specifically will be expert in dementia care. unfortunately, the basic science attempts to clone dr. boxer have so far been unsuccessful, but the second-best thing would be to train young physicians to
specialize in this field. the fifth objective was to ensure availability of high- quality, culturally response to the cremation and foster a no ron or policy. having practice in san francisco -- a cultural response to the recommendations, fostering a no wrong-door policy. we are around so many languages, and the age at the highest risk of developing dementia almost involves -- always involves language barriers. and yet, the training materials and educational materials and the inserts, and with the medicine, the web sites, they
are often not translated into the appropriate language. i give kudos to kathy and family caregiver alliance with regard to their effort to provide translation and culturally- inappropriate materials. the recommendation of the task force -- culturally-appropriate materials. the recommendation of the task force was that that be carried out in every implementation. and what is the no ron-door policy? people with dementia present in all different ways, and it might be to the department of motor vehicles, to a daycare center, to the police. what we want to foster within the city and county of santa cisco is however you happen to come into the city, there is no wrong door. you will be channeled to the appropriate care provider and things will go smoothly. i think it is a lofty goal.
i also think we are far from it now. the sixth recommendation, a single point of contact. like parents who are advancing in age have a 24 hour a day, seven day week computer technical support system. whenever there e-mail gets locked down, with a drag something off the desktop and lose it, whenever the computer what started all, they can get help.
right now, help is the hardest thing for care givers and sufferers to find. and too often, when you find somebody, that person retires or moves and you have to start all over again. the seventh objective is implementing a range of effective support strategies, including respite care. again, we have a wonderful model here in san francisco, with family caregiver alliance, but we want broadening, rather than trimming, the availability of support services.
given that my time is up, come on up. this is our opportunity to hear from you about these things. are there two people with microphones? good. all we need now is for you to raise your hands. >> thank you. knowing that we did thise- particular document, it captures a slice of time, a slice of time that is now. we also know that it is a moving target. anything that can make a change in terms of how the recommendations are carried out, obviously changes in a research role make a difference. changes in policy or budget make a difference. so what we will ask you now is that we have about 10 or 12 or 15 minutes to actually ask for your input on the first seven.
we did not look for the entire list, so we are overwhelmed. thinking about your experiences, about these recommendations, how do they relate to your life? it might be a personal experience as a care giver or a person who has been diagnosed with of the disease -- with the disease, or you are actually in practice. we would like to get your reflections about this recommendation and get a feel for what really hits you as far as what you would like to see. what is missing? did we not hit the mark on some of these activities? i hope we have a number of people who want to participate in this dialogue.
it will not be the only time that you will be able to participate in shaping this. there is always time to shape this, but we want to get your initial reactions. we do have a report before you, but we do know that you all are here arfor a reason and have an opinion about something in the report. do i see any hands? ok. do we have some? >> i am wondering -- i like the 311 system, and i wonder if you cannot have a way to have some sort of a program like a lot of insurance companies where a lot of data could be on a computer program.
you could get a volunteer to staff it, and everyone calls for information about support, etc.? >> i just turned to my colleagues to ask if they would make a response. >> hello? can we have the microphone? >> i can talk really loud. keeping the information that we have current is a challenge, but absolutely attainable, a way of holding that peace, so no matter
where somebody comes into the system, they can access. we are in the beginning stages of 311, but that was something that also went out to recommendation. >> a comment here. >> these dimensions people are usually eccentric in the beginning. with their behavior. i wonder what you will do regarding the first manifestation of this behavior? [inaudible]
>> one thing we've looked at was, how do we began to get at those systems -- how do we help people to understand what -- that changes begin to occur before you identify symptoms, and the person is impacting their community, their home, and in the workplace. and we do not know what is going on, except for being obnoxious. and that is a really good question. one thing we talked about was, when we do education and services, how do we train people in the community to recognize these as early warning signs and make sure that people get a sense1rn? i think we do that well right now, but we turned that
dementia -- we are talking about dementia-friendly. do i recognize that somebody in my plan is changing their personality? their mood has changed, their behavior is have changed, and something is going on. >> [inaudible] a special bed in a hospital for long-term care. in the future, long-term care will be more. [inaudible] what if they want to have a family? some, they do not have one. how are you going to respond, and how will you allocate -- or where are you going to put those people in the hospital?
[inaudible] >> one recommendation -- not to delay this, but we did look at the recommendation about how can we bring up the capability of the particular resources, knowing that on the nursing home side, we have relatively few beds for our population and we are going to have even less in the future. in some ways, the bad situation is a huge, looming problem. but we also thought that there might be ways we can address that. i want to hold your thought, because i think it is a good one, and will be one of the key
issues, because we have so many individuals living alone. >> thank you, and i hope to consider the providers -- i hope that you consider the providers. >> yes. thank you. ok. we do not have any opinions in this audience at all. [laughter] >> thank you so very much for this hard work you have done. i am a full caretaker 24-7 to a recently-diagnosed patients who is my only sibling, my sister. she is 53 years old. all of this is new to me. i am overwhelmed by the support i see in this room. [applause]
i want to share a personal story, and i would like to underline the need to educate. i particularly would like to stress the medical provider aspect of this. before my sister's diagnosis, i had a professional career in advocacy, so i came to it as a professional. no other time in my life did i try to apply my skills in a more vital way than what i saw my sister beginning to fail. she had been under a psychiatrist's care for four years, being treated for severe depression, up posttraumatic stress, and the possibility of bipolar illness. in my gut, i felt there was something more going on and i
comfortably rang the alarm. i did all the things that i knew to do. the questions to my could not get a referral for a neurologist until two years later. and before i could get her to the memory center, i had to find a doctor who would see her. she was already diagnosed as moderately impacted by alzheimer's. so my plea is that once again medical providers also need to understand not just to look within their own specialties to recognize the importance of this, but also the caretakers and no firs